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Most children with autism go undiagnosed until after age 3, and many of these children remain undiagnosed until after they reach school age, according to a new study1.
The findings, published in the April issue of the Journal of the American Academy of Child and Adolescent Psychiatry, highlight gaps in implementing best practices for early autism screening and diagnosis.
“There’s a lot of work to do,” particularly in translating advances in screening into actual practice, says lead researcher Chris Sheldrick, now research associate at Boston University.
Late diagnosis denies children access to early intervention, which is known to improve their language and social skills, says Diana Robins, associate professor at the A.J. Drexel Autism Institute in Philadelphia, who was not involved in the study. “We are letting our children fall through the cracks,” she says.
Another study, published in February in the Journal of Pediatrics, offers a possible solution: It shows that, compared with the traditional paper-based assessment, a digital version of a screening tool is more effective at prompting pediatricians to refer children for further evaluation2.
“It shows you the power of technology,” says lead researcher Geraldine Dawson, director of the Duke Center for Autism and Brain Development at Duke University in Durham, North Carolina. “When you have a very busy pediatrician, if you can do anything to make [screening] more efficient, that’s going to improve the quality of care.”
Too little, too late:
The first study analyzed data from two national surveys of children’s access to healthcare: the 2011 to 2012 National Survey of Children’s Health and the 2009 to 2010 National Survey of Children with Special Health Care Needs. Parents of more than 467,000 children, 4,652 of whom have autism, completed one of the surveys over the phone.
The two surveys pegged the average age for an autism diagnosis at 7.4 years and 5.4 years, respectively. The proportion of children diagnosed before age 3 was 17 and 23 percent, and the proportion diagnosed after age 6 was 51 and 33 percent, respectively.
“When we look at these numbers, it should grab all of us in the gut, saying, ‘We have to do better,’” Robins says.
The American Academy of Pediatrics recommends routinely screening toddlers for autism at 18 and 24 months of age. Pediatricians typically use the Modified Checklist for Autism in Toddlers (M-CHAT), a questionnaire that asks parents about eye contact and other behaviors in their child. If a child shows autism traits on the measure, clinicians are supposed to ask parents a set of follow-up questions and recommend next steps based on the responses.
This follow-up can add up to 30 minutes to a routine visit, Dawson says. As a result, many clinicians skip it, potentially missing some children with autism or mistakenly flagging children without the condition.
Dawson and her team created an app that delivers the M-CHAT to parents on a tablet. The app scores the questionnaire automatically and administers follow-up questions to parents when necessary. It then generates a report with the child’s score and suggests recommendations for the clinician, such as referring the child to a developmental specialist.
The researchers put the app to use in a pediatric clinic at Duke University for six months. Parents of 529 children aged 16 to 30 months completed the M-CHAT during this trial period. The researchers compared these results with those from 649 parents who completed the paper-based version of the same screen.
Both platforms flagged similar numbers of children for autism signs. But the proportion of children whose parents answered follow-up questions and were referred for further evaluation increased from 25 percent to 85 percent after the researchers introduced the app.
The findings hint at an easy way to make autism screening more efficient and effective, says Wendy Stone, professor of psychology at the University of Washington in Seattle, who was not involved in the study. “It’s very good preliminary evidence that this is a feasible practice for offices to adopt,” she says.
Dawson and her team plan to test the app in more clinics. They hope ultimately to pair the app with a tablet-based video program that can record and analyze autism behaviors in children during clinic visits.